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Monday, June 13, 2011

With only the tips of his elbows touching his bicycle’s upturned handlebars, Damian Lopez Alfonso (pictured) pedaled along the Hudson River bike path on a cool March day. His balancing act elicited stares from disbelieving pedestrians and curious double-takes from fellow cyclists.

Because not only does Mr. Alfonso ride his bike without forearms, lost in a devastating childhood accident, but he also rides it very, very fast.

Ms. Lea, a former elite racer from Maryland, found herself in a ragtag pack of riders on a highway pocked with “car eating” potholes outside the Cuban capital. “I’m worried about these guys in tight, fast conditions,” she remembered thinking, “and all of a sudden, I’m racing next to a guy with no arms!”

She watched as he powered through the course, lifting his body to shift gears with the nubs of his elbows or press down on the brakes. “Then I realized he had more control than most of the people in the race,” she said.

Despite his disadvantages, Mr. Alfonso, 34, has won local competitions at home in Cuba and he races nearly every weekend against able-bodied cyclists in informal events. But the alterations to his bike that allow him to do so — turning the handlebars nearly 180 degrees upward, so the brakes and gear shifters face him — have also kept him out of officially sanctioned international competitions, which have strict equipment rules.

But not for much longer.

In July, Mr. Alfonso is scheduled to race in Canada, the first event on his road to qualifying for the 2012 Paralympic Games in London. If all goes well, it will be the culmination of a nearly decade-long journey for Mr. Alfonso, a story of sudden tragedy, grim determination and a little help from a lot of perfect strangers in a bicycling community thousands of miles away.

Since Ms. Lea and others began spreading word about the Cuban cyclist with no arms and disfiguring injuries to his face — also from the childhood accident — riders from as far away as California and Germany have sent money, and companies including Fuji, Shimano and a prosthetics maker, Hanger, have provided state-of-the-art products that will help him ride in the standard position so he can compete at an elite level.

But Mr. Alfonso’s strongest supporters are in and around New York, following his progress on Facebook or the widely read local racing blog NYVelocity, and donating their time, money and spare bedrooms to help him in the city, where he came for medical tests and has spent nearly four months undergoing a series of painful reconstructive operations and being fitted for prosthetic arms.

The operations alone would normally have cost hundreds of thousands of dollars but are being done free.

One rider provided the use of a car service to get Mr. Alfonso around town; another lent him an old iPhone; several have acted as translators on doctor visits; still others have made small cash donations totaling $8,000 to support him during his stay.

And a few have gone even further. Ace McDade, a former New York racer who lives in Ridgewood, N.J., opened his home after seeing a Facebook post early this year.

First it was for just a few days in March, before the operations.

Then there were 10 days between operations, and now Mr. Alfonso will probably stay with Mr. McDade, his wife and three daughters — ages 12, 9 and 7 — until he returns to Cuba late this month.

“It was an easy thing to offer; we have so much to give and he’s in such a tough spot,” Mr. McDade, 48, said. “He and my daughter Mei” — the 7-year-old — “have this wonderful relationship where he calls her crazy and she turns around says, ‘No, you’re crazy, Damian, Soy es loco.’ ”

Perhaps it is his surprising self-confidence that draws people in, leading them to help a stranger from Cuba who never asked for any help.

Whatever the reason, the cyclists who have rallied around Mr. Lopez took their common interest and used it to turn the big city into a small town, a place where bonds form by chance and compelling need is met with overwhelming generosity.

Mr. Alfonso, who had never visited New York before arriving in December for a series of medical tests, now calls it “the best city in the world.” And here, as in his native Havana, everyone simply calls him Damian.

BUT last month, between rounds of facial operations at NYU Langone Medical Center, Mr. Alfonso was depressed.

Slumped in a black leather chair in the bustling hospital lobby, a gleaming white bandage wrapped around the top of his head, he wondered whether all the surgery and the prosthetics had been a mistake. He missed riding, had gained weight and was not sleeping because of pain from the operations.

And for what? After 20 years, he had long since learned to cope with his altered appearance and learned to ride despite his disability.

“The bicycle’s on vacation,” he said in Spanish, eyes half closed, pushing whole sentences forth in frustrated bursts. “It’s going to be like that for a long time.”

His aunt Edilia Tamargo, up from Tampa to help care for him, sat nearby and translated. He had been asking her to tell him stories about their family’s hard times in Cuba — his grandfather’s alcohol problems, a lack of money around the house, how as a girl she was forced to work in the house of a rich neighbor.

“I like to hear that everyone has suffered,” Mr. Alfonso explained.

His curly hair usually bounds up confidently when not pressed down by a bicycle helmet, but the bandage pulled it low and tight over swollen skin that cut diagonally across the bridge between his closed eyes.

He sat forward and flicked back and forth two images on the donated iPhone with his right elbow: the first, a photo of him riding at a Pennsylvania track in March; the second, a black-and-white portrait of him as a fresh-faced blond boy in a Cuban school uniform.

Mr. Alfonso’s childhood was radically altered at 13, a time when he was less passionate about cycling than about homemade wood-and-paper kites. “I had the record for finding the most lost kites of all my friends,” he said in an interview in March.

So when he saw a particularly attractive one — large, and decorated with a hand-drawn picture of a skeleton — caught in the power lines above a neighbor’s building, he and a friend climbed to the roof to get it down.

He recalled his friend, Igor, who was slightly older, telling him: “Just leave it there. Don’t mess with that.”

Ignoring the boy’s advice, he reached for the kite with a metal rod.

“We heard an explosion,” his aunt, Ms. Tamargo, recalled. She lived with Mr. Alfonso’s family in a three-story green concrete home in the Casino neighborhood of Havana, where Mr. Alfonso still lives with his mother, a retired military typist.

“I look up,” Ms. Tamargo said, holding back tears, “and I see this blond hair hanging off the roof.”

She paused for a long time.

“Thirteen thousand volts,” she said finally. “They lost the fridge, the TV — the whole building.”

The metal rod had bounced off the power lines, delivering burns to Mr. Alfonso’s face as well as to his arms and torso. Infections cost him his forearms; he was horribly disfigured; but a team of doctors, including a prominent Argentine plastic surgeon, were able to save his life. He spent about a year hospitalized in Havana.

“When he first saw himself, I was walking him around the hospital in a wheelchair,” Ms. Tamargo said. “He saw in a crystal door and he screamed, ‘I’m a monster!’ But he didn’t cry. He just hollered. He never cried. Never. Never. He has never been ashamed of himself.”

Mr. Alfonso had raced only a few times before the accident, but afterward, he seized on the bicycle both as a mode of transportation and as a way of proving himself. “I wanted to beat a normal person,” he said. “Whenever there was a bike race, I competed.”

Over time, Mr. Alfonso became a fixture in Havana’s small cycling scene, taking part in pickup races most Saturdays at the “guyava,” a 12-mile loop of hills and fruit trees outside Havana.

Jesus Perara, a native of Havana and a bicycle racer now living in Hell’s Kitchen, remembered him from these races, which often ended up at a local cafeteria, where riders traded stories over glasses of garapa, a sugar cane drink. “Everybody knows Damian,” Mr. Perara said. “He rides the bike so fast, with no hands, it’s unbelievable.”

Indeed, nearly everyone who rides with Mr. Alfonso has been impressed by his endurance and bike handling.

“If he had never had this problem, I don’t know if he would have excelled at this sport, whether he would have had that tenacity,” said Mr. Perara’s wife, Nanci Modica, who first met Mr. Alfonso in 2002 while racing in Havana and is among his biggest supporters in New York. “He’s got something special that he can just dig right through the pain.”

Ms. Lea, the Maryland rider who raced next to him in Cuba, saw him again during a later visit to Havana at the Reinaldo Paseiro Velodrome. “He came over and nudged me — because I don’t have any Spanish — and took my Allen key away from me and fixed my bike,” she said, adding that they grew closer during her trip. “That’s when I said, there’s got to be a way.”

Soon she was spearheading an effort to bring him to the United States for surgery.

Ms. Lea, 56, struggled to get him a visa and find a foundation willing to take on his case. Most were focused on children and did not want an adult from abroad. Finally in 2008 she found the National Foundation for Facial Reconstruction, which finances the Institute of Reconstructive Plastic Surgery at NYU Langone. After seeing photographs of Mr. Alfonso, the foundation agreed to take on his case.

“He’s probably one of the most difficult reconstructions I’ve ever seen,” said Dr. Oren Tepper, who is treating Mr. Alfonso with Dr. Joseph McCarthy, director of plastic surgery at NYU Langone and the lead surgeon on the case.

THE electrical burns had singed deep scars across his face, destroying large swaths of blood vessels, which are needed to connect new tissue to build facial features.

The doctors, finding few options, relied on a method that involved creating a nose by pulling down the forehead skin, waiting for the blood vessels to connect, and snipping the “flap” back to create the new feature. They used a similar technique to create a lower eyelid using skin from the upper eyelid.

In two rounds of surgery in April and May, the doctors remade his nose, left eyelid, chin and cheeks, and worked to slim his neckline and to improve his mouth, which, because of the muscular complexity, proved most difficult.

“He lost his whole mouth,” Dr. McCarthy said. “There’s no great way to reconstruct that.”

A separate team of specialists worked on the prosthetics that will allow Mr. Alfonso to ride with his handlebars in the normal position, which has proved to be challenging. Few if any cyclists have raced competitively without forearms, said John Rheinstein, a prosthetics designer at Hanger, so developing the right device has been a process of trial and error.

Because the rules prohibit attaching prosthetics to the bike itself, the arms must fit tightly enough to give Mr. Alfonso control over the bike while allowing enough free movement for him to shift gears and to brake.

“Nobody’s ever done this before,” said Mr. Rheinstein, who estimated the cost of the custom prosthetics, which are being donated, at $10,000.

On a crystalline June afternoon, Mr. Alfonso rode in Central Park for the first time with a prototype of the arm extensions — a plastic cup connected to metal tubing and a hard-rubber claw-like “hand.”

Mr. Rheinstein and a team from Hanger stood along the park drive just north of the Metropolitan Museum of Art as Mr. Alfonso saddled up, clipped into his pedals and pushed off, gripping the handlebars with his new rubber claws.

He passed slowly around a bend, then stopped. Wrenching the arms off the handlebars, he clicked them together in disgust.

“I don’t like it,” he said. “I’ve ridden my whole life the other way, and now I can’t brake. I don’t know why I need this. Why do they have this stupid rule?”

Riders and runners passed along the drive, arching their heads to stare at the scene of Mr. Alfonso, in a blue, gray and white Fuji racing uniform, discussing changes to the prosthetics with Mr. Rheinstein and his team. Mr. Alfonso and Mr. Rheinstein decided to change the arm to make it shorter and retest it later in the afternoon.

“Unfortunately, I don’t think the happy ending is going to come right away,” Mr. Rheinstein said.

Indeed, learning to ride with the new arms will take time and training, as Mr. Alfonso adapts his highly developed riding style and gear. Despite state-of-the-art electronic shifters from Shimano, which allow him to change gears by lightly tapping a switch, using the prosthetics “will be hard,” he said.

Mr. Alfonso knows he needs to adapt if he is going to win medals, and eventually his competitive drive will take over, he said. “Because winning means always going forward,” he said. “Going forward, leading, always.” At 34, he quite likely has two shots left at the Paralympics, in 2012 and 2016.

His facial reconstruction has not gone easily, either. His body rejected a chin implant, and doctors removed it on Thursday. Final, outpatient surgery for touchups to his rebuilt nose are to be done in a few days.

With so little time for Mr. Alfonso to adapt to the prosthetics and train before the July race in Canada, Ms. Lea petitioned last month for an exemption to the strict equipment rules; after a back and forth, the international body that oversees paracycling granted her request, though it remains unclear whether the exemption will extend beyond July.

In any case, the prosthetics will allow Mr. Alfonso to compete in official bike races, from London to Saturday mornings in Central Park, something he is keen to do. But on this afternoon in Central Park, as the Hanger team left to tweak his new arms, Mr. Alfonso returned to his old position and set off for a quick loop of the park drive.

He rode slowly at first, blending with the other cyclists out for an afternoon ride in the spring sun and looking entirely at ease. After a while, his legs began pumping strongly. He gripped the sides of his upturned handlebars with his bare arms, rose from the saddle and powered up Cat’s Paw hill.

He was in total control of the bike, and he left every other rider behind.

About Me

I am full-time Mass Communication faculty at Towson University in Maryland and adjunct faculty in the City University of New York (CUNY) Master's in Disability Studies program.
I research media and disability issues and wrote a 2010 book on the subject: Representing Disability in an Ableist World: Essays on Mass Media, published by Advocado Press.
The media have real power to define what the public knows about disability and that's what I research.